Staff experiences of participation in everyday life of older people with intellectual disability who live in group homes

Kåhlin, Ida

Linköping University, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Arts and Sciences.ORCID iD: 0000-0003-4740-4494

Kjellberg, Anette

Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.

Hagberg, Jan-Erik

Linköping University, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Arts and Sciences.

Abstract [en]

This article aims to explore ways in which members of staff in group homes for people with intellectual disability experience participation, and what participation means for older people with intellectual disability. Qualitative interviews were performed with 15 members of staff at group homes in Sweden. The findings of this study are illustrated by considering two interacting themes and six subthemes. These involve staff experiences of the meaning of participation and factors which facilitate or inhibit it. The meaning of participation was expressed as doing and feeling. Staff described that participation for older people with intellectual disability was influenced by the individual characteristics of the residents, such as the relationship between age and disability. They also expressed the view that participation was influenced by organizational and physical contextual factors such as economics, time and space as well as the social environment. The latter included staff knowledge and skills, family and peers.

Kåhlin, Ida

Linköping University, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Arts and Sciences.

2015 (Swedish)Doctoral thesis, comprehensive summary (Other academic)

Alternative title[en]

Participation (also) in old age : Ageing and participation among people with intellectual disabilities living in group homes

Abstract [en]

Participation of people in all ages is one of the main goals in Swedish disability policy. Despite this, ageing and becoming old with intellectual disability has been given very little attention in policy documents and guidelines regarding support and service provided for this group. This thesis aims to explore ageing and participation among older people with intellectual disabilities who live in a group homes in accordance to the Swedish Disability Act. The focus has been on the group of people who were born before or around 1960. This group belongs to a generation that share unique experiences. They have lived a long life with disability, and they have experienced first-hand the development of the Swedish disability policy that started in the 1960s and resulted in today’s disability policy. These experiences carried through life course are likely to influence this group’s opportunities to participate as they age and reach later life. The thesis has a multiple methodological approach. Participant observations were executed and combined with individual semi-structured interviews with older people with intellectual disabilities as well as group home staff. The results of this thesis show that there is a discrepancy between how older people with intellectual disabilities experience ageing and later life and how these in turn are described by the staff. The thesis also reveals how aging and becoming old is not given particular attention to in everyday discussions in the group home, and that aging is understood mainly as a physical phenomenon. The results show that the formal organizational culture of the group home is weak in relation to ageing and becoming old with intellectual disability. This is because the staff perceives a lack of preparation, discussion and working methods on how to support participation among older residents. The results also show, however, that the residents’ age does play an important role for the staff’s perceptions and attitudes regarding participation of the older residents. The concept of participation is described and operationalized as a social contextual doing, and as an aspiration to create a sense of coherence or experience of meaning and security at home. Finally, this thesis underlines that the life course unique to persons growing old with intellectual disabilities may influence the opportunities for and the experience of participation in the group home.

Identifiers

Public defence

Opponent

Gustavsson, Anders

Stockholms universitet.

Supervisors

Hagberg, Jan-Erik

Linköping University, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Arts and Sciences.

Kjellberg, Anette

Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.

Taghizadeh Larsson, Annika

Linköping University, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Arts and Sciences.